Welcome to the San Diego Chapter!
Thank you for visiting the San Diego Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
2021 California Walk & Roll a Tremendous Success!
On Saturday, September 18, the Bay Area, San Diego, Los Angeles, and Sacramento chapters came together from across the state for one, amazing day of walking & rolling to Cure FSHD! Walkers and rollers stepped out to say "FSHD Ends with Me!" and our local event raised more than $90,000 towards the campaign total, through participants and teams from across the state.
Stay tuned as we begin the planning for our 2022 Walk & Roll to Cure FSHD!
Volunteer Spotlight: Amy Bekier
Hear from your local Chapter Director (and National Board Member!), Amy Bekier, about her journey with FSHD, how she got involved with the FSHD Society, and what she gets out of her work.
Volunteer Spotlight: Dana Simone-Kurtz
Next, meet your local Walk & Roll Coordinator, Dana Simone-Kurtz! She describes her relationship to the disease, her motivation, and advice for the newly diagnosed.
Upcoming Events
FSHD University: Pregnancy and reproductive genetic counseling
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and... Read More »
Women on Wellness
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women... Read More »
Wellness Hour (Virtual Meeting)
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of... Read More »
AMY BEKIER
Chapter Director
Amy Bekier obtained an M.S. in Education from Queens College, NY and had a career as an insurance agent and Chartered Life Underwriter. When FSH muscular dystrophy began affecting her and her family her motto became, “I can no longer sit and cope but must get active and hope”. After relocating to San Diego she joined the FSHD Society as a national Board member and Chapter Leader.
Amy is a passionate award winning artist who enjoys painting with soft pastels and oil. When she could no longer raise her right arm to paint, she taught herself to paint left handed. Until recently Amy played modified recreational golf and continues to be a member of the Bernardo Heights Country Club.
Stay Informed on Chapter Activities!
Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.
When you sign up you'll receive the latest word on clinical trials, information on how to live strong, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.
If you want to know more about this and why it is so important, learn more HERE
Your personal information will be kept strictly confidential.
